[tri-med] Re: opthamologist

And another thing...(as I step back up to the soapbox!).  We went to clinics
this summer too, and got another opinion on Elanor's scoliosis surgery.  We
were going to have to do spinal fusion (front and back), which would have
been a really hard surgery on her.  Our orthopedist didn't want to do it at
the age of 7, but her curve was so bad it was necessary.  To tell you the
truth, I think he, and all of us were dreading it.  We talked to the ortho
at clinics, and he recommended the VEPTR surgery instead.  When I went back
to our ortho he was actually excited about it!  He encouraged us to look
into other options, because we would regret it if anything went wrong with
the fusion, or if we chose not to operate at all.  In my opinion, doctors
should welcome second opinions, especially with kids like ours.  It is just
silly and egotistic to be insulted if you ask me.


Jennifer Vanderbeek
Boise, Idaho
Mom to Arwen, 9; Elanor, 7 (T18); caregiver to Joe, 29 (Cerebral Palsy), and
wife to Andrew

I'd like to be OCD, but I just don't have the time...

Check out Elanor's CaringBridge site at:
http://www.caringbridge.org/visit/elanoranne



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of dncingqwn@xxxxxxx
Sent: Tuesday, December 18, 2007 10:35 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] opthamologist

about a week or so ago i took kaiya to see the opthamologist. wait...some
background might help this post make more sense.
kaiya has ptosis in the right eye, the nerve in the right eye is also small.
in her left eye the nerve is shaped differently - has a coloboma. even with
this, the doctors don't feel that her vision is all that bad. she tracks
well, she looks at things. so we had a visit right before conference this
year and the doc prescribed patching because he felt she was using one eye
more than the other. and i would have thought that she would use the left
eye more because the right eye is kind of closed - but he said the left eye
seemed to be the weaker one. he also prescribed glasses. he said that the
prescription wasn't all that high so they weren't mandatory - but it might
help with some of her issues at school. the one issue that i've always had
is kaiya will tilt her head back to be able to see out of her right eye.
doesn't do much for her posture! i brought this up to the doc and he said
that as long as she's compensating for the ptosis, he wouldn't recommend
surgery to fix it. so
  we went on our way...and went to see the opthamologist at conference. this
doc pretty much disagreed with everything our opthamologist here
said....which brings us to the visit a week ago (takes a long time to get in
b/c they only take medicaid patients one day a month...blah blah
blah....that's another story) so anyway - this doc that we had seen
previously, and i really liked him the first time we met b/c he sat and
talked about trisomy and had questions and made recommendations...well, he
seemed a little disturbed that i brought in a letter from the doc we saw at
conference. it's not like i walked in waving it around saying "AHA YOU WERE
WRONG!" i just said, hey - this guy said one thing and you said another -
i'm confused - can you take another look and see what you think? so yes,
kaiya is a tough examination because she would rather smile and flirt at the
doc than look through his silly lenses - deal with it dude! in the end the
doc brought in another doc in the practi
 ce and this guy took a quick look at kaiya. he sat down and we had "the
discussion". (i'm sure you are all familiar with it.) he asked if she was
going to be getting any other surgeries any time soon and i told him no.
then he went on to say that a lot of kids have ptosis as severe as hers and
don't even notice it. they just compensate with the other eye. he said that
if he saw a "regular" kid with a ptosis this severe he would definitely do
the surgery. and if she was going under for something else, he would
definitely do it b/c he could just pop in, fix the eye, and it wouldn't be a
big deal. but because of her trisomy other issues have to be considered.
(this is where the hair on the back of my neck began to bristle...) he did
not feel that she would have any issues with anesthesia, and the surgery
wouldn't be a huge issue for her because it is a simple repair. he said that
all issues had to be looked at to see if the surgery would really be
beneficial to her. we wouldn't
  ever be able to know if her vision was improved all that much because she
couldn't tell us. so he told me that while it would be a necessary procedure
for a "normal" kid - for kaiya it was basically an elective procedure. he
said that some parents choose to be agressive and some feel that their kids
have enough going on without having to be put under for this type of surgery
as well. now, to give him credit - he did put it very well. my
interpretation of our conversation is obviously not worded as well as he
said it. which is why i think i'm conflicted. i went in with the mind set
that this ptosis should definitely be fixed, and her compensations are not
working because they are negatively impacting her posture which as a whole
does not work. when i walked out, i almost felt guilty for thinking that
way... i don't know if it's just a mommy thing and i'm scared to let them do
anything to my baby...or what is going on. we go back in three months for
another check up and to gi
 ve him an answer i guess...

so basically, what do you guys think? 

kelly - mom to akaiya T18 - 5 yrs.

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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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